Yet another day and month with a focus on a marginalized people. March 31st was Transgender Day of Visibility. April is a month that focuses on autism and April 2nd was Autism Awareness day. Notice anything about the differences between these names? One is about being visible, noticed, affirmed, included, and providing education. The other calls for awareness, a word that does not imply visibility, that still seems to push people into not being visible with their autism and identity as an autistic person. In Toronto to mark Autism Awareness there was a flag raising for Autism Ontario at Nathan Phillips Square. This was not an event that was organized or run by actually autistic people. In response to this, Autistics for Autistics Ontario (A4A) planned a counter-rally to ensure that diverse autistic people were not only present, but visible. The counter-rally was not against Autism Ontario, but for showing diversity and ensuring inclusion of autistic people in discussions. I attended the counter-rally as part of A4A and stayed for the flag raising by Autism Ontario and the unveiling of the A4A created flag.
A4A members and supporters gathered where the flag raising was taking place. Autism Ontario had booked and planned the event on the upper level of Nathan Phillips Square. As people gathered for the flag raising there were a number of discussions and people took flyers that A4A had prepared. Some of us had discussions with people from Autism Ontario that were cordial and it appeared that they were willing to at least hear us out. As part of the counter-rally four people spoke about autism from their own perspectives, research, and experiences. People who had arrived for the flag raising were interested and paid attention to what was said.
The Autism Ontario event was rather disappointing. They had a number of speakers before the flag was raised. Mayor John Tory spoke as did provincial cabinet minister Michael Couteau who was responsible for the Ontario Autism program. Other speakers included the Ontario Ombudsman, a representative of BMO (corporate sponsor), and the Executive Director of Autism Ontario, Margaret Spoelstra. There were also two autistic people who spoke about their perspectives. Both autistic people appeared to be male. The only woman who spoke was Margaret Spoelstra. Congratulations, they had an almost all-male list of speakers. This is part of why the A4A presence was necessary.
Autistic people are not all males. Autistic people are cis, trans, non-binary, binary, genderfluid, and everything in between. The lack of diversity in speakers was noticeable. It showed that awareness is not about visibility, but about the opportunity for publicity for Autism Ontario and not the wider autistic community.
The speeches were not easy to hear unless one was in the thick of the people sitting in chairs or standing. This is a problem for those of us who are not comfortable in tighter, more crowded spaces. Because I was not up to being in the midst of the crowd, and the poor quality of amplification I did not hear everything each speaker said. The content of the speeches seemed to be mostly boilerplate type materials that repeated a lot of the points we hear all the time. The BMO person sounded like a stereotypical corporate manager who was doing a lot of patting themselves on the back because they have a practice of hiring a few autistic people. We do not know what working conditions are actually like for autistics working at BMO, nor if they are paid adequately.
For those of us who were part of the counter-rally minister Couteau’s presence was particularly problematic. The Ontario Autism Program is not a program we can support. It limits what resources are funded and allowed in schools, there was no autistic representation in schools, and it promotes ABA (A4A Position Statement). ABA is practice that has been shown to increase the prevalence of PTSD in autistic children and youth. Further, it is based on and was developed with the same principles as reparative/conversion therapy for those who are LGBT. Reparative therapy is a practice that is illegal to practice on children in Ontario.
What stood out most for me was that all of the speakers used person-first language when talking about autistic people. At this point identity first language is what the majority of autistic activists and self-advocates are using, and want to see used. The post “Identity First Language” by Lydia Brown is a good discussion as to why we prefer identity-first language. I like to use an analogy comparing it to how we use identity first language among trans people. We do not say “someone with transgender”. Those who do use it, usually referring to transgenderism or transsexualism, are the ones who would deny our existence as trans and put as many barriers in our way as possible. To constantly hear the person-first language coming out of the mouths of the speakers was tiring, exhausting, and was a message to autistic people that our voices are not being listened to. We can be tokens for publicity sake, but when we raise actual concerns we will not be listened to, a topic I explored in my post, “A Cat Named Autism”.
After the speeches and flag raising there was a reception in the area outside the City Hall Wedding Chapel. This was a confined space that was crowded and loud. What a great way to send a message of inclusion to autistic people! We just love being in spaces that cause sensory overload within about thirty seconds of being in the space! The idea that spaces can be overstimulating for autistic people is not a new one. Listen to us when we say this is a problem. We’ve only been saying it for decades. Or, maybe we need a white, neurotypical/allistic, straight, upper-middle class professional man to say it in order to be listened to.
A question I have for organizations that are promoting autism awareness this week and this month: What are you doing to be truly supportive of autistic people?
Call to Action
We can and must do more as a society. Some concrete steps include, but are not limited to:
- Do not claim ABA is the end-all and be-all for working with autistic people.
- Ensure that #ActuallyAutistic people are not only present, but given a voice and listened to.
- Stop using person-first language when talking about autistic people.
- When having public events, include a diversity of autistic speakers.
- Do not dismiss autistic people who speak for themselves.
- Avoid use of labels that focus on how “functional” a person is.
- When hosting events, ensure that they are not sensory nightmares and ensure there is a quiet space where people dealing with overload can go for respite.